Saturday, November 19, 2011

Its been almost a month since Callie has been to a whole day of school. Even as I write this, I am shocked that Callie has been out of school for that long. I have to say that in spite of the fact that I was nervous to go to the meeting with her teachers/principle, it went really well. They were all really compassionate and wanted to do what is best for Callie. It is so hard to know what to do for her because she is unable to keep up with school right now, but if the medicine works, she will be able to get back to her life soon. We decided that (for now) she would concentrate on English when she feels good enough to do school work. And if need be, she would make up the credits for this semester later.

Most of the time Callie is down with a headache. It seems though, that there is a small portion of the day that she is up and able to do a little work. So hopefully she will at least get to have her English credit. Well, really I hope that her medicine works soon for so many reasons, but one of them being school.

Callie has gotten a bit lonely lately. Today her friends, Beca and Emma came and spent part of the day with her. Callie told me multiple times how happy she was that they were here. At one point she had a glazed look on her face. I asked her how she felt and she said, "my head hurts, but I'm just so happy that they are here." When she said that, she looked like she was going to cry. All and all though, she had a good day. For most of the day she said that her pain was around a 6. She even went out for lunch. She didn't really eat much but at least she got out of the house with her friends for a little while. Its amazing what a little emotional pick me up will do for all over health. For which I am very grateful.

Callie just told me that she has a ringing in her ear. Her head pain is at a 7. I hope it subsides and she is able to get some sleep tonight.

Thursday, November 17, 2011

Yesterday was a busy day for us. First, I took Callie to the Orthodontist to see if her braces were ready to come off. I was really hoping they were because with her head hurting so bad, we thought that it might help her feel better. I was excited when we were told that the top ones could go! It is so nice to see her pretty top teeth without braces. They really turned out nice.

Callie, was rather miserable though. Her head hurt really bad. She kept complaining that the left side of her head, and her left eye hurt the most. It seemed strange to me that it was hurting so bad because from her last vision test, her right side was worse than the left side. (Last month we were told that because pressure from the Psudotumor, Callie has some blind spots, which are worse on the right side.) Yesterday afternoon, I took her to the eye Doc. He found that her LEFT side has significantly worse blind spots, and her right side was only slightly worse. This was very disappointing . The Nero Doc saw the report this morning and called me. He said he wants Callie to see an Opthamologist, so that if she ends up needing surgery on her optic nerve they can be ready. I think I mentioned in my previous post that the most serious side affect of Psudotumor Cerebral is vision loss. The Nero Doc said that it shouldn't be a problem if we stay on our toes. He also said that if Callie has any vision changes (double vision, blurred vision, etc.) then to take her strait to the ER).

Today is my meeting with Callie's school teachers and principle. I am a bit nervous about it. I told the Dr. this, and he said that they cant fail Callie for being sick. I hope he's right.

On a brighter note, someone brought us some really yummy pumpkin bread. I think I've ate more of that than I should have.... Oh well we only live once right? Might as well eat all we can!

Monday, November 14, 2011

Pseudotumor Cerebri, are two nasty words to me. When I first heard them (just a little over one month ago) I could barley pronounce them. I remember talking to our Pediatrician (Dr. Baily) the morning after we first saw the Nero Dr. (Dr. Cook). I had to explain the condition to her because I couldn't remember the name.

Dr. Cook gave me a few papers to read on this condition. But, its basically when a person has to much brain and spinal fluid. This creates a lot of pressure, and as a result......... headaches.

Callie has had headaches for about a year now. Over the course of the year they progressed in frequency until they got to be daily, and even further until they became a 24/7 problem.

This is Callie's scale of pain.

3-4~ mild headache, normally she can ignore these and still do school work, play sports, watch t.v., hang out with friends, and so on.

5-6~ she can kind of ignore these, and do somethings like watch t.v., or visit with friends. Its just hard to focus on school work.

7-8~ she cant do anything with a headache this bad. No loud noises, no t.v..... Nothing.

Callie has never had a headache that she has described to be above an 8. I hope she never does.

Up until about the beginning of October her average headache was either at 5 or below. (75%) 5 or below. (25%) above a 5. Then, suddenly the tables turned and she started having bad head pain 75% of the time and mild pain 25% of the time.

In the last 4 weeks, Callie has been in the hospital 2 times. After 2 Lumbar Punctures (spinal taps) She has been "solidly diagnosed" with Pseudotumor Cerebri.

Here are some things I have learned about the condition....

1. It is VERY uncommon in children and teens.

2. It is scary. Her vision has been affected to a small degree. One of the bad side affects of this is vision loss.

3. If medication doesn't work...... Well, I'm just going to pray that the medication works.

4. Its depressing to read other peoples stories associated with this condition.

Callie is on a medicine called Diamox. It is suppose to help her body get rid of the extra Cerebral fluid. We were told that it would take a while before we notice a difference in her headaches. For now though, her head and eyes hurt really bad. I talk to Dr. Cook about it today and he told me to try to get her into an eye Dr. (hopefully tomorrow) to make sure her vision hasn't changed.

She hasn't gone to school in over 3 weeks (maybe 4, I'm loosing track of time). I have a meeting with her principle and teachers on Thursday to figure out what to do for her.

Today Callie and I were talking about how crazy it is that she went from being my biggest helper, right hand child, to one that needs me the most. Dr. Cook said that when kids develop this they normally out grow it. I am praying so hard that Callie does so that she can have a normal life.

So many people have helped us. I don't even know how to express my gratitude for all the acts of kindness people have shown to our family. Both while Callie was in the hospital, and since she has been home. I almost cry every time I think about it.

Callie was given a blessing when she was in the hospital the last time. She was told that trough this, she would gain experience. She was also told that her body would heal. I felt the spirit so strong, I believe that she will.